Physician Tool Kit:
Management of Myelomeningocele
(Spina Bifida)
MOMS 2The Study Continues: The trial that brought us the most significant advancement in the history of treatment of spina bifida carries on.
The next phase of MOMS continues to follow the original participants, allowing us to directly compare and better understand the long-term effects of prenatal versus postnatal repair of myelomeningocele.
Learn more»
Prenatal surgery to treat myelomeningocele, the most severe form of spina bifida, is one of the most exciting developments in the history of treatment for birth defects. It is also an extremely complex procedure that requires extensive experience to perform successfully. Mothers who choose fetal surgery require the most expert and carefully coordinated care from the time of diagnosis, for the spina bifida surgery itself, and through the baby's delivery and care afterwards.
Spina bifida affects about 1,500 babies born each year in the United States. A spina bifida surgery breakthrough, reported in the New England Journal of Medicine, is providing new possibilities to families faced with this devastating condition.
N. Scott Adzick, MD, director of the Center for Fetal Diagnosis and Treatment at CHOP, was lead author on the landmark Management of Myelomeningocele Study (MOMS), which proved the efficacy of prenatal spina bifida repair versus postnatal repair. The article, "A Randomized Trial of Prenatal verses Postnatal Repair of Myelomeningocele," chronicles the study conducted from 2003 to 2010 at CHOP and two other centers.
The study found prenatal repair resulted in:
- reversal of the hindbrain herniation component of the Chiari II malformation;
- reduced the need for ventricular shunting to relieve hydrocephalus; and
- reduced the incidence or severity of potentially devastating neurologic effects.
The long-awaited results validate the work pioneered by the Center team over more than 20 years; developing the prenatal repair technique, conducting extensive tests in animal models and then cautiously applying the therapy in select patients. Follow-up through 2 1/2 years of age for study participants is ongoing and will be completed in October 2013. And there is more insight to be gained.
MOMS 2
Today, under the continued coordination of the Biostatics Center of The George Washington University and the sponsorship of Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), the second phase of MOMS is underway.
The trial’s 183 families continue to be monitored to determine the long-term effects of prenatal repair of myelomeningocele with respect to adaptive behavior, physical and cognitive functioning, health and well-being, and future reproductive health of the mother. This important stage of follow-up work, continuing through November 2016, will provide valuable insight into the lasting outcomes of prenatal repair versus standard postnatal repair in children 6 to 9 years of age.
This unique opportunity to directly compare the long-term effects of prenatal versus postnatal repair will answer many questions about spina bifida, ultimately helping both clinicians and patients make an informed choice about the treatment options available.
Myelomeningocele:
By the Numbers 1,552Referrals for suspected Myelomeningocele (MMC)
722Evaluations for suspected MMC 145Fetal surgeries for MMC All numbers reflect data from 1995-September 2012 at The Children's Hospital of Philadelphia.
Surgeons at CHOP's Center for Fetal Diagnosis and Treatment were not only pioneers in fetal surgery, they developed the prenatal spina bifida surgery procedure and have the greatest collective experience in the world. The Center's large multidisciplinary team, including fetal surgeons, neurosurgeons, anesthesiologists, fetal cardiologists, neonatologists and radiologists, has worked together since 1995 — a level of ongoing collaboration that is unmatched.
A quick look at our patient volumes prove the Center is a valued resource for evaluation and treatment of myelomeningocele.
Specialists at the Center partner with you to provide a seamless continuum of care, discuss the diagnosis and treatment options, offer suggestions for follow-up if fetal surgery is required, and remain available for consultation for the remainder of the pregnancy as part of the patient's ongoing prenatal management team.
We welcome your questions, comments and referrals. Call us at 1-800-IN-UTERO (1-800-468-8376) or complete our online form.
Resources for Professionals
To better partner with you, the Center has created a number of professional-focused resources about myelomeningocele and spina bifida, treatment options before and after birth, as well as offer you resources you can share with your patients.
Fetal Surgery for Myelomeningocele: A Guide to Specialized Fetal MMC Surgical Repair
This flipchart for healthcare professionals provides an overview of spina bifida, facts about myelomeningocele, when fetal surgery is a treatment option, details about the actual prenatal repair, along with recovery time, delivery and follow up care.
The document also provides volumes and metrics about treatment for myelomeningocele at The Center for Fetal Diagnosis and Treatment at CHOP.
View a dynamic PDF of the guide. Compatible with iPhone, iPad and Android devices.
New England Journal of Medicine
This study in the New England of Journal of Medicine outlined the results of MOMS and establishes fetal surgery for spina bifida as a new standard of care.
Adzick NS, Thom EA, Spong CY, Brock III JW, Burrows PK, Johnson MP, Howell LJ, Farrell JA, Dabrowiak ME, Sutton LN, Gupta N, Tulipan NB, D'Alton ME, Farmer DL for the MOMS Investigators. A Randomized Trial of Prenatal Versus Postnatal Repair of Myelomeningocele. N Engl J Med 2011; 364:993-1004.
Fast facts: What you need to know about prenatal spina bifida repair
Fetal repair of myelomeningocele is now offered as a standard of care at The Children’s Hospital of Philadelphia. Download our fast facts sheet for a high-level summary of the MOMS trial, the prenatal procedure and how the Center for Fetal Diagnosis and Treatment has revolutionized treatment for children with myelomeningocele.
Referral guidelines for myelomeningocele
Comprehensive individual evaluation of each pregnancy is essential to determine whether fetal surgery for myelomeningocele is appropriate. To help you gain a clearer understanding about when prenatal surgery may be appropriate and when it is not recommended for the health of mother and/or fetus, we have developed referral guidelines for fetal surgery for myelomeningocele.
If you'd like to refer a patient to the Center for Fetal Diagnosis and Treatment for a full evaluation or discuss a case with a member of our team, please contact us at 1-800-IN-UTERO (1-800-468-8376).
Online CME
The Center for Fetal Diagnosis and Treatment offers an online continuing medical education module on Fetal Myelomeningocele Repair: Tribulations and Trials. Course highlights include:
- reviewing the natural history of myelomeningocele diagnosed before birth;
- identifying the indications for fetal myelomeningocele repair; and
- discussing the results from the Management of Myelomeningocele Study (MOMS).
The CME is available for 1.0 AMA PRA Category 1 CreditTM for physicians and is offered free of charge. The course is also available for CE credit for nursing professionals. Go to online CME for course details and accreditation information, or go to CME: Myelomeningocele to register and take the course.
In Utero Insights newsletter
The Spring 2011 issue of In Utero Insights, the Center's newsletter to the professional community, focused on the landmark MOMS trial that found prenatal repair of myelomeningocele can substantially improve outcomes. This newsletter is also available in Spanish (en Español).
Case Study
Prenatal repair of myelomeningocele. ©CHOP A 27-year-old woman was referred for assessment of a 23-week gestation fetus with thoracolumbosacral spina bifida. The lesion was first detected on a 20-week ultrasound performed because of an elevated maternal serum alpha-fetoprotein level.
Read this case study about successful fetal surgery for spina bifida repair.
Resources you can share with patients
Condition content — English and Spanish
The Center has detailed diagnosis-specific information about spina bifida and prenatal repair of spina bifida, as well as other fetal anomalies, written for families. Easy-to-understand diagnosis pages are available in English and Spanish (Español). Feel free to print out and share Children's Hospital resources with your patients. To access the Spanish content, look for the "en Español" tab under the banner of each page.
Patient stories
As new families investigate fetal surgery for spina bifida, some past patients talk about how their children are progressing after receiving this groundbreaking surgery.
See our spina bifida snapshots, as well as in-depth stories about Mia’s spina bifida prognosis and Sean’s spina bifida diagnosis.
Video: Birth of a Breakthrough
In our DVD, Birth of a Breakthrough, Center team members explain the prenatal myelomeningocele repair procedure and the comprehensive, multidisciplinary care provided for both mother and baby at The Children's Hospital of Philadelphia. Created for clinicians and patients, it's essential information about this important treatment advance.
You can watch Birth of a Breakthrough online. To request a copy, call 1-800-IN-UTERO (1-800-468-8376) or complete our online form.
Recent publications on myelomeningocele at CHOP
Staff of the Center for Fetal Diagnosis and Treatment have written extensively about fetal surgery for spina bifida. See below for recent peer-reviewed publications. For a look at CHOP’s long legacy of research about myelomeningocele, see fetal surgery for spina bifida publications.
Adzick NS, Thom EA, Spong CY, Brock III JW, Burrows PK, Johnson MP, Howell LJ, Farrell JA, Dabrowiak ME, Sutton LN, Gupta N, Tulipan NB, D'Alton ME, Farmer DL for the MOMS Investigators. A Randomized Trial of Prenatal versus Postnatal Repair of Myelomeningocele. N Engl J Med 2011; 364: 993-1004.
Adzick NS. Fetal myelomeningocele: Natural history, pathophysiology, and in-utero intervention. Semin Fetal Neonatal Med. 2010 Feb; 15(1): 9-14. Epub 2009 Jun 18.
Danzer E, Johnson MP, Adzick NS. Fetal surgery for myelomeningocele: progress and perspectives. Dev Med Child Neurol. 2012 Jan;54(1):8-14. doi: 10.1111/j.1469-8749.2011.04049.x. Epub 2011 Jul 11.
Danzer E, Adzick NS. Fetal Surgery for Myelomeningocele: Patient Selection, Perioperative Management and Outcomes. Fetal Diagn Ther. 2011, Aug 18. [Epub ahead of print]
Danzer E, Zhang L, Radu A, Bebbington MW, Liechty KW, Adzick NS, Flake AW. Amniotic fluid levels of glial fibrillary acidic protein in fetal rats with retinoic acid induced myelomeningocele: A potential marker for spinal cord injury. Am J Obstet Gynecol. 2011 Feb; 204(2): 178.e1-178.e11.
Danzer E, Gerdes M, Bebbington MW, Zarnow DN, Adzick NS, Johnson MP. Preschool neurodevelopmental outcome of children following fetal myelomeningocele closure. Am J Obstet Gynecol.2010 May; 202(5): 450.e1-9. Epub 2010 Mar 29.
Danzer E, Finkel R, Gerdes M, Schwartz EM, Rintoul NN, Adzick NS, Johnson MP. The relationship of seizure activity and chronic epilepsy in early infancy and short-term neurodevelopmental outcome following fetal myelomeningocele closure. Neuropediatrics. 2010 Jun; 41(3): 140-3. Epub 2010 Sep 21.
Danzer E, Gerdes M, Bebbington MW, Sutton LN, Melchionni J, Adzick NS, Wilson RD, Johnson MP. Lower extremity neuromotor function and short-term ambulatory potential following in utero myelomeningocele surgery. Fetal Diagn Ther. 2009; 25(1): 47-53. Epub 2009 Jan 28.
Danzer E, Ernst LM, Rintoul NE, Johnson MP, Adzick NS, Flake AW. In utero meconium passage in fetuses and newborns with myelomeningocele. J Neurosurg Pediatr. 2009 Feb; 3(2): 141-6.
Danzer E, Finkel RS, Rintoul NE, Bebbington MW, Schwartz ES, Zarnow DM, Adzick NS, Johnson MP. Reversal of hindbrain herniation after maternal-fetal surgery for myelomeningocele subsequently impacts on brain stem function. Neuropediatrics. 2008 Dec; 39(6): 359-62. Epub 2009 Jun 30.
Danzer E, Adzick NS, Rintoul NE, Zarnow DM, Schwartz ES, Melchionni J, Ernst LM, Flake AW, Sutton LN, Johnson MP. Intradural inclusion cysts following in utero closure of myelomeningocele: clinical implications and follow-up findings. J Neurosurg Pediatr. 2008 Dec; 2(6): 406-13.
Danzer E, Radu A, Robinson LD, Volpe MV, Adzick NS, Flake AW. Morphologic analysis of the neuromuscular development of the anorectal unit in fetal rats with retinoic acid induced myelomeningocele. Neurosci Lett. 2008 Jan 10; 430(2): 157-62. Epub 2007 Nov 17.
Grant RA, Heuer GG, Carrión GM, Adzick NS, Schwartz ES, Stein SC, Storm PB, Sutton LN. Morphometric analysis of posterior fossa after in utero myelomeningocele repair. J Neurosurg Pediatr. 2011 Apr;7(4):362-8.
Watanabe M, Li H, Roybal JL, Santore MT, Radu A, Jo JI, Kaneko M, Tabata Y, Flake A. A tissue engineering approach for prenatal closure of myelomeningocele: Comparison of gelatin sponge and microsphere scaffolds and bioactive protein coatings. Tissue Eng Part A. 2011 Jan. 31. [Epub ahead of print]
Watanabe M, Jo J, Radu A, Kaneko M, Tabata Y, Flake AW. A tissue engineering approach for prenatal closure of myelomeningocele with gelatin sponges incorporating basic fibroblast growth factor. Tissue Eng Part A. 2010 May; 16(5): 1645-55.
Wilson RD, Lemerand K, Johnson MP, Flake AW, Bebbington M, Hedrick HL, Adzick NS. Reproductive outcomes in subsequent pregnancies after a pregnancy complicated by open maternal-fetal surgery (1996-2007). Am J Obstet Gynecol. 2010 Sep; 203(3): 209.e1-6.
Click here to see the full research history in support of prenatal myelomeningocele repair »
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For more information, to refer a patient or discuss a case with a member of our team, please contact us at 1-800-IN-UTERO (1-800-468-8376) or use our online form.
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